Do you remember the Robert de Niro/Robin Williams movie, Awakenings? I saw it when it came out around 1990, but I’ve never forgotten the miracle-followed-by-heartbreak bit. Short story: neurologist messes with brains using pharmaceuticals to reverse catatonia. Miracle return-to-life followed by lack of miracle.

In my last post I wrote about those 5 days I had recently, 5 days where I had partially emerged from the brain fog of the last 13 months and experienced life calmly and quietly.

I told about the beauty of calm clarity being torpedoed and the return to the mush of brain-addled anxiety. Oddly enough, it was in slow-motion: it took me two days to fully collapse inward after the hate-bomb landed.

One line in that post, a few words only to describe the anguish of the return to the addled state. The anguish came from observing the descent, of clawing the walls of my dry well on the way down, begging to not go back to the bottom.

I don’t get a choice about emerging into the sunshine or plummeting to the rocky bottom. I am able only to choose tools to ease the descent and the following days/daze of being.

The last 5 months have been brutal. That’s the only word I can think of. Brutal.

I’m doing OK. Tired, quiet, but returning to calm. Hoping for more days like those 5 days. I liked ’em!

For part of the last week, I experienced something new: calm and clarity. I could feel it start on the Friday, pushing through the fog that actually parted instead of closing over me. By that Monday I had emerged in time to enjoy the warm spring sunshine streaming shadows in the budding yard.

By Wednesday, I knew that I had been floating along gently, same rhythm as the last many months–two to three hours of “doing” followed the rest of the day and evening by “being.” But calm. No brain-addled anxiety. For 5 days. Days of — what? How do I describe? Days of the opposite of the last 5 months. Serenity.

Bang. Hatefulness right between the eyes by a once-close family member. I had set her aside a year-and-a-half ago following a vicious attack-by-proxy. The way I had to set our father aside a generation before he died because he was a walking landmine.

With bomblets in his pockets, he wandered through many lives, dropping them when a new shiny caught his attention. He was a brilliant man, but his social intelligence was petrifying to observe and to be swept up in.

He taught the next generation well, but it was his social skills he taught. How horribly sad. He should not have been a parent. He made a great husband, I guess, because he married six times.

What she doesn’t see: she has improved on his version of creating destruction–he wandered away, but she flings the bombs to protect herself against any perceived slights. And, worse yet, she doesn’t yet know that she has taught the next generation, father’s grandson, to live in fear. She doesn’t see her ripple effects or just doesn’t care.

She also doesn’t know that sending hurt my way won’t ease the horrible hurts he inflicted on her. Getting whole by proxy doesn’t work.

Enough about them. Hatefulness has been commented upon.

By Friday, I was feeling tired and knew that my 5 days of calm clarity were drawing to a close. I hung on, a deeply hidden part of me screeching with despair: here comes the fog and upset, but it can’t be, because I felt so good and how could it just end like that for no reason when I followed all the damn rules to be quiescent? And why do I keep saying I’ve had 5 days of calm when it has been 7 since the start of the calm? Oh, because on the 5th day came the hate.

I don’t have much emotional capacity still. Emotional experiences use up my limited brain battery, leaving less ability for nicer pursuits. An overt demonstration of familial hatefulness would have been difficult in the before-time. Now, I pay an astonishingly steep price.

Isn’t that the way of hatefulness, though? An immediate price is exacted from the recipient, an emotional slug to the chops. The purveyor of hate will have a price to pay. Later. In living color.

Now it is up to me to make room in my life for what I want: calm. After living through the anguish of laser-guided hate, I will put thoughts away; I must not allow them to roam around, poking at the wound, keeping it festering. I have done this before with family. Now that I’m well-practiced, it will go more easily, I’m sure.

I have been circling around this writing for at least a couple of months, which means that all day long, I try to find something else to think about. But, at some moments, the pain and horror of my situation threaten to overcome me. I must find a way to express the daily realities, to let them wash over and around me instead of smashing me gasping under a wave, getting my face scraped off along the sand.

toasted

In the summertime, I think, heretherebespiders wondered where my upset was about all that had happened. I didn’t have an answer.

I see now that the answer lay in the brain fog I lived in for better than 9 months. The fog has been lifting steadily I see, and especially since about October.

This has been and continues to be a terribly lonely journey. I have no map whatsoever.

The truths:

I have about two to three hours of brain strength per day. If I exceed that, I become overtired.

Take a long moment right now and imagine having three hours per day to be “productive.” That includes making breakfast and lunch, laundry, dishes, feeding the cats, and visiting with family at home. Now add in something enjoyable like art. How does it all fit? It fits into a daily dance, a constant choosing.

The hints of fatigue are not broad, so I sometimes miss them.

Or, I ignore them because I just want to be the me of the before-time, with interests and curiosities and friendships and the energy to pursue same.

Brain strength is different than physical strength; brain strength operates the physical strength. When I start to get tired, the feeling is thus: every last one of my three gajillion body cells starts to shrink into flatness as the energies are squeezed out from those mini power plants, and I begin to crumble in on myself.

moods in collage

My brain goes vacant, with spaces of nothing between thoughts or conversation, my eyes blink slowly. I have no idea that my judgement is impaired because, well….

Driving remains difficult and only attempted when I’ve checked internally for energy and tested for slow blinks. The thought of injuring someone is too grievous to fully contemplate.

Music is still lost to me. How can that be?

My daily life is a state of being tired. If I become overtired, I become mush. I melt. Tears and sobbing amid confused heartbreak. Apparently, this is quite normal with a traumatic brain injury.

I live in perpetual remove from the world–if you were with me, you’d see a flat affect, but might think I was being introspective. But if you know me, you might wonder where the sparkly amusement was, the eyes crinkling as I understand a joke about to happen.

Now you’d see me waiting for you to finish talking, then I’ll probably laugh. As long as I’ve understood the joke.

With the overtired, the hazy remove from the world intensifies and deepens, so that I’m very far away and it is too much effort to try to understand conversation, and words on a page tumble and blend into blobs of glop (‘though words tumble even when I’m not overtired).

lost

Recently, quite by accident, I heard the best description for all these moments: the becoming over-overtired is when the battery of my brain runs down. The tears aren’t depression in the clinical sense. Recovery time is whatever it is.

I spent a day with a friend several weeks ago, a day I have been pining for–she is wonderful people and has always fed my soul and spirit.

Two days later, I crashed hard, face-down, scraping against the sand, gouged to the bone, as the wave dragged me around.

The crashes are horrible–I want to disappear so Big Mister doesn’t witness the melty goo. He used to hate it when I would cry; those before-time cryings were nothing compared to how it goes now. I see the heartbreak in his face. I want to run and recover by myself, let him not see the crying and agonies.

When I’m over-overtired, mundane household stuff can be beyond my ability. On a recent night I couldn’t figure my way through putting dishes into the dishwasher. Tears. Explanation and departure.

nightmares

My fears:

If I slow down as far as I need to in order to remain brain-unruffled, I’m terrified that I’ll just stop.

I will be left by myself in this mess.

The mess will be permanent.

The good news:

The brain fog has been lifting.

I have continued doing art since I began again in late spring, several months out of hospital.

pages and pages of painting

I walk better, needing less concentration.

My verbal language has returned to about 90 percent of the before-time. I have always said quirky stuff, so it’s less upsetting now. Mostly, it’s less upsetting because the balance shifted out of brain-addled to more ability.

My written language has returned to about 90 percent as well. Typing and writing are both still challenging–still I write words backwards or even words I hadn’t intended to write or type. Forming the letters by hand sometimes comes in unfamiliar patterns.

The massive, nauseous headaches of the last several months are becoming infrequent.

I get the impression that the me emerging from this mess is the sunny, happy child I was: sweet and loving, with less of the hard person I had become.

But if I’m tired, and struggling to understand, I may explode with the fatigue of concentrating on the moment and shout in frustration. Probably only with Big Mister, unfortunately for him and us.

I want to live and I want to live well. That much I have learned in these just-shy-12-months since coming home from a short hospital stay to discover my brains had been scrambled.

Ed. note: I wrote this piece several weeks ago, but I must leave this essay where it ended then. I have no ending. Only a continuing.

__________________________

8 months (this time for sure)

It’s a rough go right now. I’ve hit the 8-month mark since the catastrophic hospitalization. This recovery feels odd to me: I look just fine on the outside, with the exception of rocky walking, but my insides are the parts that are churning, perhaps in healing throes. We can hope.

I have very little capacity for being in The World; going to the grocery store twangs the one nerve I have left. Even as I drive into the parking lot, my eyes search, it feels wildly, for obstacles and dangers. I search because I have trained myself to do so. In the new way, in the after-time way.

So much we do automatically and autonomically, for which I am thankful. And relieved. Stimulus is everywhere, stimulus that in the before-time entered my power station, and was duly cataloged as Usual, Unusual, or Danger.

Ponder this: what happens if I don’t know that my brain is not cataloging? What happens if there are blanks where there should have been autonomic awareness?

Sad answer: I fall off a ladder because my inner know-er has lost track of me on the ladder, on those steps, where I am moving deliberately, slowly, like the mountaineer I used to be who knows to always have three points of contact.

sense of space

I have a blunted sense of space, of my relationship to the space I inhabit. It is as if, momentarily, I cannot see, a long, slow brain-blink, and the danger is upon me: falling off a ladder, smashing my hands, walking into the edges of walls.

The reason I knew had to train myself to search for obstacles and dangers is that on a day leading up to the ladder-flight, I became aware of brain-blanks, spaces where there should have been none. I was driving and my brain blinked.

I had planned to turn left, had the signal on, was looking both ways (yadda yadda), and when it was clear, I drove straight ahead, tires slightly squealing. I got lost for a nano-nanosecond and made an error while driving. Cars are enormous weapons and I made an error.

In sorting out these brain blinks with the help of Big Mister, we discovered that in that week of thrashing myself to the mat getting my studio mucked out, I really did push myself way too far. I couldn’t hear the brain-voice that told me I was done. I soldiered on, as is my wont anyway, right to brain exhaustion. The exhaustion created spaces in mah haid [“haid” with a drawn-out Scottish brogue]….

shapes of my world

Words have given me power, power unrecognized to me until now. Words have shapes, made up of the letters that belong. Too often now, I do not recognize the shape of a word, so cannot spell it, cannot even work out how to spell it. Tides of heavy grief wash through me and I sob with sorrow so deep I cannot find bottom.

The essence of Me has shifted and I have not caught up. I don’t even know if I should bother to try to catch up. Maybe this is all temporary, a horrible life lesson, and my facility with language will return.

If words are shifting shape, then I cannot form memories with them. As an editor, one of joys was the puzzle-icious nature of inviting a whole document into my head while I looked at its parts.

That is to say: Reading on page 296 and the author has used a synonym for a term or concept introduced much earlier. I must puzzle out whether this will be startling to the intended audience, so I pause and search in my head for the first mention of that term. Ah, yes, it was on page 34, first paragraph, 3rd line.

My assumptions about immediate comprehension and synthesizing appear. The in-the-background brain-work that happens, the cataloging, the remembering.

I started playing Bookworm sometime in the last few months. For about a month now I have been unable to play because I cannot see the words, and if I try, it is entirely too much effort inside mah haid. Now, I play a Mahjong game, a matching game, and that feels like a rehab exercise.

fun?

Big Mister will leave within an hour or so for the campering vacation I requested but am unable to go on. He asked what kind of fun would I have on my stay-cation. I didn’t mean to be a downer or to be negative, but the truth was that it would be business as usual for me: staying close to home (driving = bad), being very quiet, obeying the cats, reading…. I guess it isn’t time for easy Fun yet.

Though today there was supposed to be Fun for me–My Peeps were coming to pick me up for a lunchtime hang-around. We have not been together in way over a year, maybe 1-1/2 years?! But, ooops, sickness in our midst and we’ll have to reschedule.

Mrs. Ploppy of The Peeps, endured chemo for the last half of last year, only finishing this past January. (She is now 14 months cancer-free! May we have a hallelujah from the audience?!) She has been an incredibly stable part of my recovery; she has been my friend.

Our Third is regular ole, regular ole, healthy and happy. Her husband mused one day if perhaps Mrs Ploppy and I were keeping Third around for spare body parts.

Apparently, my heart has transported itself to my right side, protected under the clavicle bone. How do I know that? Because when the masseuse told me to allow a word to surface from my inner self and then to store it under my heart, I felt the word being stored in my heart on the right side of me.

It wasn’t that weird dyslexic confusion that has been magnified lately. With calm certainty, I knew that’s where my heart was.

Recovery-time is huge right now, the changes to my brain right smack in my face, like a crack across the cheekbone outta nowhere. Repeatedly. Daily. Hanging on…

To lose my facility with words has been an ego-bashing. Is this what the Buddhists mean by, to rephrase, flattening the ego? I dunno. Don’t care right now.

My words have been a source of power to me, a power that has fueled the Me for half a century, back to the moment as a toddler where I wailed that I couldn’t read. Even then I knew that words were a power source, that words open worlds. “Bushels and acres and stars and worlds….”

If I describe this time only as “disconcerting,” I leave out the internal, lonely horrors. But “disconcerting” suggests a cacophony, a lack of organization, a lack of a unified whole.

I have 15 lb of floooofy cat sitting on me, I’m drinking a cup of coffee (which I missed yesterday), and the sun is shining in the window.

Feeling better today. I guess I forgot that I could get regular sick!

Your concern and good wishes carried me through a scary day. I realized this morning that my fear was the first powerful somatic remembering of that awful day in February that profoundly changed my sense of me.

Maybe now that that is outta my system, the remembering, I can have another cup of coffee and look around for breakfast. Or feel feisty. Or post about another book. Maybe all of ’em!

Share the brilliance!

Like this:

I’ve been ill this morning, too closely reminiscent of the morning of the septic shock. I am alone because Big is on vacation. It’s a bitch being sick and alone, but I really wanted him to have a break from all this. I’m having a moment between, shall we say, bodily expression of trying to expel illness.

Please, may I ask, send healing vibrations for me through the interconnected web. I’m not sure I can survive sepsis so close to the other episode.

And I just got the studio organized. Big vacuumed before he left, so I have had a clean house. Don’t let that be in vain.

I don’t have any stinkin’ answers about any stinkin’ thing. I will, however, share what I find and you can do some pondering.

If you’ve been following the blog, you know that following my catastrophic personal perfect storm, my brain has taken a hit and I’ve had heretofore never-ever-ever-or-ever-experienced difficulties with reading, writing, and comprehension.

Ed. note: the writer appears to have had her last nerve gotten upon by the economic and medical machines. You have been warned.

____________________________________________

Refinancing car and house loans

We have just finished refinancing our car loan and are just about finished refinancing our house loan. These are both very good things. We’ve dropped our monthly output by about $500 (about £300, €390), which helps as my savings dwindles. (Tons of “helping” programs out there now in mortgage-land because of the horrifying mortgage debacle that tanked our economy. Yours, too.)

Yes, it’s true that I have not worked since January because of the near-dead thing, but too, the economy still thinks I’m too old to be valuable in the workplace. I’m 55. Bastards. Hence the pursuit of Art as $$$. (Art is still a much better fit for me as a way to earn money, so that’s just displeasure expressed on behalf of the other old folk who can’t get an interview, much less a dang job.)

Recycling debt

Where does this recycling debt come in? Our banker (loosely called that since they don’t actually touch money and their storefront is a few desks tucked away in the ubiquitous giant grocery store chain)…

Aw hell, let me try again–Our banker reassured us that by refinancing our car loan while we’re smack in the middle of refinancing the house loan, we would not cause any ripples in said house loan re-fi. She said: “You both have excellent credit, and besides, you aren’t taking on new debt; you are recycling old debt.”

We’re green: reuse and recycle. Can’t think of a way to re-purpose.

(End of economic nerve-twanging. Surprisingly short, huh?!)

Recirculating serotonin

Simplistically stated, serotonin is a happy-chemical produced by our own brains to keep the mood stabilized and the sense of humor intact. Some of us seem to have low levels of serotonin, which results in a not-happy state. (Oooo, ooo, that’s me {waving arms wildly}!)

So, some years ago, my medical machine helped me back to the happy state by prescribing antidepressants, which were, I was told, going to boost my serotonin levels. Side effects? Schmide-effects! What’s a seizure between friends?

Hold that thought.

Because of the, shall we say, intensity of the near-dead thing and the COMPLETE lack of medical support following same, I have at last come off the fence (pickets are pointy), and am returning to my former hippie-dippie, I’ll do it my own damn way, there are too alternatives (you money-sucking Bastards) Stubborn Self.

In removing myself from the antidepressants, I have been warned that I could experience a return to the not-happy state that existed prior to the ingestion of same. Seems odd…

In doing some brief research yesterday to understand amino-acid therapy for stabilising mood, I learned why: these miracle drugs (money-sucking Bastards) don’t actually boost the serotonin levels. The drugs (wait for it!) recirculate the low levels we already have.

Couldn’t you medical-machine folks have told me this, as part of full disclosure? Whywhywhy did you have to be all paternalistic ‘n’ sh!t and pat me on the head and leave out this detail?

Nothing for you to worry about, My Precious. Trust me. Whywhywhy did you not give me alternatives when I begged for them because I did not want to take these miracle drugs, but did not know where else to turn? Whywhywhy were you all doom-and-gloom as you told me that this was the only answer?

what now?

Predictably, I am on a bit of a roller coaster ride. Add this to my recovery, which is blatant about being long-lived, and is now showcasing my memory-forming dis-ability, and I’m sending Big Mister on vacation alone. We were together sposta get in the old funky truck that hauls the old funky camper and go tootling off for a week.

I need a break from being observed in my throes of FFS, WTF???? Of having my lack of short-term memory reflected back to me… Of being in multiple kinds of pain and seeing him worrying about me.

I need to do something for him, and I know it will make him happy to tootle around with no negotiation about going here or there….

No ladders while he’s gone. I swear. Yeah, sure. I just wanna live my life and live it well and do pretty much whatthehell I want when I want. A discussion of adult-onset dependence will occur someday. Watch This Space.

This reminds me too keenly of a family-story my mother tells: as a pre-reading toddler, I was out to dinner with my parents and my slightly-older reading-age brother. The nice waiter thoughtfully handed me a menu along with the others. My clearly-heartbroken response: “But I can’t reeeeeeeeead!”

Like this:

Yesterday, I took a tumble off a ladder to the concrete floor in the garage. I fell into about the only blank place on the garage floor except for smacking one arm into the giant steel scooter carrier.

I didn’t even hit my head; I’m a little disappointed: maybe it would have shaken up some of the fog and forced it out my ears.

I also didn’t break the heavy-duty electric stapler, which I’d left at the top of the ladder. Thank-the-whole-Universe that it wasn’t in my hand! Can you imagine the plunk-plunk-plunk-plunkety-plunk of an out of control electric stapler?!

I learned something: I do scream spontaneously at the top of my lungs when I’m falling uncontrolled to a hard concrete floor and wondering what garage stuff I’m about to slam into.

Big Mister learned something, too: From all the way in the house, he can hear me scream!

Sorry ’bout that, Big. I’m so sorry you had to find me in a heap on the garage floor, preceded by hearing the screaming. Egad. (Happy 14 years! Look, I didn’t screw it up: I’m alive! Again! Bonus points!)

Well, back I go to the garage in a few minutes, where I will stay, feet on the ground and look at pretty pictures or somethin’ safe!

why not talk openly about septic shock?

I also realized, through what I did not say, that the hospital and follow-up family-doctor folks were quite willing, in that horrified over-the-top, it’s-gonna-get-you way, to talk about C. diff, but avoided talking about the septic shock as if they had something to hide or as if the sepsis was an unmentionable. Odd that.

I’m pretty sure they had nothing for which to be reproached. It wasn’t the fault of the hospital that I was so ill and they did save my life.

Their silence projected an unnecessary, and quite hurtful, whitewash over the near-death experience.

From casual research, just searching in the WordPress Reader for “sepsis,” I see that medical folks are baffled and appalled by the high incidence and violent onset of septic shock in hospitals.

Sometimes I just want to package up my posts about my recovery and send them somewhere, to someone in the medical world who might give a damn.

Which is a source of piss-offedness: why did I have to piece together what had happened to me, what had tossed me, writhing, at death’s doorstep? What in the effing hell? Hellooooo, health care, where were you??!! @*&†¿☹!! Oh never mind.

We now return from the rant.

my personal perfect storm

Yes, I was out of it when I wrote that post, but too, in the intervening months, I have been able to piece together the puzzle of the perfect storm of events that led to the catastrophic state in hospital.

In case anyone is curious, here are the parts of my own personal perfect storm that I have pieced together so far. Still some blanks, like those jigsaw puzzle edge pieces that the cat knocks to the floor and the dog eats.

This will be the first time that I’m aware of (?) putting my perfect storm into words. (Memory has taken a beating from the septic shock, both past memory and making new memories. …)

Part 1 — systemic infection

Unbeknownst to me, I had a jawbone being eaten away by infection, probably for several years, because of a not quite sterilized root canal. I’m not blaming anyone. I cannot imagine how difficult it would be to track down all those bacteria before closing up the dead tooth.

During those years, I’d become ill in an odd way: sinus infections along with extremely low energy, fainting, and general malaise.

A good feel for that time is, in hindsight, captured in my blog posts in the month or so leading up to my departure for Italy (McHales’ Navy, for instance). I thought I was aware how awful I felt. I had no idea what was really going on.

Here is what was going on: indeed did have sinus infections, quite likely from the infected jawbone. The low energy and fainting are directly attributable to the low blood pressure, which is a sure sign of systemic infection.

Systemic infection = bad —> deadly.

Part 2 — C. diff

In January and early February, (13 February = hospital for me) I went to see a patient first in a hospital, then in a care center. Recall that C. diff spores live on surfaces in those places and the spores are very difficult to kill.

I probably carried spores home with me.

Part 3 — antibiotics

I got antibiotics on 6 Feb, 16 days before leaving for Italy. The antibiotics prescribed were a broad-spectrum variety, meaning they kill everything that isn’t nailed down, as opposed to an antibiotic with a more narrow focus.

The antibiotics took just under a week to destroy the biota that were fending off the C. diff spores.

Interesting cruising...

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Reinventing the Event Horizon
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heretherebespiders
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me, mine and other bits
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Serenity Spell
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NeoWatercolour
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